THIRTEEN YEARS

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  • #69363
    dawnan
    Member

    Thank you for sharing your story. It gave me hope after researching and seeing some stats that really pulled me down.

    They just found cancer cells in my distal bile duct…in December 2016 the brush biopsies came back negative.

    #69373
    hercules
    Moderator

    Hello positivity, I initially quit eating fried food, pretty much all fried food, just boiled, baked or grilled, steamed, and no deep fry, pan fry, or alcohol for a year. I lost eighty pounds and I have kept it off for ten years. I began drinking alcohol moderately after about a year which seems to stimulate bile production. The pill is Meloxicam and I take 1 a day. I started with 7.5 mg. pills, and later upped the dose to 15 mg. pills. They are hard on the stomach and must be taken after a meal. They open up the bile duct and have helped me avoid dealing with a stent. I eat healthy, you get sick of salads but there are a lot of vegetables out there too. I make a stir fry with canola oil. I love rice and pasta dishes, and eat what I like with common sense. I hope I answered your question, I have appetite problems and cannabis helps me eat more and more often. I actually have difficulty keeping my weight up, perhaps because bile is a digestive enzyme and when it is released at the wrong time nutrients aren’t absorbed well, and sometimes I eat like a horse and just barely keep my weight up, I call it sport eating. The elderly woman I help can’t believe how much I eat and how thin I am, 160 lbs. and 5′ 11″ I feel this is a good weight and wouldn’t want to be any lighter. That is my dietary story, take care, Pat

    #69372
    positivity
    Participant

    Hi Hercules,
    You have an incredible story, and thanks for sharing. Hopefully we see more cases like yours in the future. Also, this includes people who are unable to get surgery as you were able. Sorry if you have mentioned this, but what is the anti inflammatory drug you have taken? Did you follow a strict diet?

    Thanks again, and hopefully we have more like you sharing stories.

    #69371
    lainy
    Member

    Dearest Pat, BRAVO, BRAVO! I know you worked hard and did everything right and now you are an honest to goodness MIRACLE! Yes, life is for the living even going to a Dentist! I am so excited to meet you next week.
    LIVE every moment! LOVE beyond words! LAUGH very day!

    #69370
    hercules
    Moderator

    Here it is, January 26th, it is even a thursday just as it was 11 years ago. How time has passed, even with the uncertainty of the next month or year. I am pleased to say there is no bad news here, just good, I have actually started addressing all the little things people without cancer do ( go to the dentist, the dermatologist, oral surgeon, all kinds of doctors, PCP) and nothing related to cc. Wow, imagine a whole year and no issues at all wit cholangiocarcinoma. It is wonderful to say to the world that sometimes it goes well, know that it CAN. I am getting older, and to some it might sound like a complaint, but here it is just a statement of the fact, a proclamation maybe, but not a complaint, I am Patrick, I had bile duct cancer in 06′ and I am here to show the world that this cancer can be surgically removed and a normal happy life can be had. It is getting hard to remember all that I went through. There is eleven years of living life between now and that surgery, The thing I struggle with most is patience, Living with uncertainty makes you always in a hurry to get things done. There is, it seems, an underlying rush at all times, and my mind goes into hurry up mode if I pay no attention. My advise, as a long term survivor is this….Slow down enough to read life’s roadsigns, as always being in a hurry equates as stress. So there you are, slow down, enjoy the life you have…it may be longer and better than you ever dreamed it could, god bless all of you, Pat

    #69369
    hercules
    Moderator

    His name was Dr. J Michael Henderson at the Cleveland Clinic, I received a letter announcing his retirement about a year ago. He was an older doctor when he did my surgery eleven years ago almost to the day (01-26-2006) and my ERCP doctor referred to him as “the very best” so I chose him.I am glad I did…I will be posting more about that milestone in 5 days, Pat

    #69368
    alikemal
    Member

    Thank you. You are very lucky. According to many scientific research Cholangiocarcinoma is considered to be an incurable disease. What is the name of the surgeon ?

    #69367
    hercules
    Moderator

    I believe it was 1b at time of resection,, Tumor was small (2cm.) when discovered by ultrasound of my gal bladder, pathology found cancer in left lobe of liver and in left hepatic duct no lymph involvement. portions of bile duct which were removed showed positive for PSC . My surgeon was incredibly good and I healed well. This surgery is complex with multiple individual difficulties. Most cases aren’t found so early. I was, and continue to be, a very fortunate man. I hope you can be the same, Pat

    #69366
    alikemal
    Member

    thank you very much for sharing. what was your stage and age when you had a resection surgery.

    #69365
    hercules
    Moderator

    No, Alikemal, I have not had chemo, I had a resection surgery (70% of liver removed) gal bladder and partial duct resection . At the time my oncologist recommended that I forgo chemotherapy . He said there was no effective chemo for my cancer. I take an anti inflammitory drug that seems to open up my bile duct and has kept things working for a few years now. No stent, no further treatments whatsoever since Jan. of 06′ . I have said it is, perhaps, the best outcome one could ask for. My digestion and functionality were perfect for maybe 8 or 9 years. I have had some bilary restriction issues that for now have been kept in check with the Meloxicam. Take care, Pat

    #69364
    alikemal
    Member

    hello all
    hercules do you get chemo ? how was is it ?

    marions what are targeted drugs ?

    #69362
    hercules
    Moderator

    Ubri, I understand that many people are more fearful of chemo than the cancer itself. I have gone to local cancer support groups and sat with people that are receiving chemo treatments at the time and some get relief from symptoms of the cancer. Everyone is different and every case is unique in some way but similarities are many. Perhaps attending a local cancer support group would give you the opportunity to talk with people getting treatments and tell you first hand the good and bad. There are herbal products that claim to help the body fight cancer, but once a tumor has formed it becomes a more difficult battle. I hope You find a treatment soon, Do what you must do, surgery is not easy either but one must do whatever it takes to stop or slow this cancer. I wish you the best, Pat

    #69361
    marions
    Moderator

    positivity….. Education is a powerful tool. It helps us understand and based on that understanding we are in a position of making the best choice possible.

    Choosing a center treating a high volume of cholangiocarcinoma/bile duct cancer is key to obtaining a second, professional opinion. USC in Southern California has a robust hepatobiliary department and the physicians: Dr. Lenz and Dr. Dr. El-Khoueiry are two oncologists “very” familiar with this cancer.

    It is unlikely for you Mom to be offered chemotherapy or perhaps any other targeted drugs unless her bilirubin is at 2, hence I am hoping for the stent to do the job it is meant to do.

    I much agree with your complaint about the failed stent procedure. We know that stents can migrate and can cause problems including cholangitis, ulceration, bleeding, and perforation, and as you mentioned physician errors have horrible consequences. So sorry.

    You are a good daughter by advocating strongly for your Mom in the way you do. I hope your Mom is feeling significantly better and you are able to connect with a specialist real soon.

    Hugs
    Marion

    #69360
    positivity
    Participant

    Hi Marions,
    Thanks for your response. My mom recently was diagnosed and I am scheduling appointments with Oncologists. She only saw the GI doctors for the MRCP, ERCP procedures and a diagnosis based on what they saw from scans. They diagnosed the same before the pathology reports. I was extremely displeased with the first GI doctor who did the ERCP, and she did not do a thorough job which another doctor had to redo the ERCP. My mom also experienced complications from the first ERCP which made her more sick. It’s extremely important that people choose a very experienced GI doctor for an ERCP, this takes more knowledge, skills, and tools than your basic procedure.
    I am looking into City of Hope , UCLA, and does anyone know about Cedar Sinai? I am glad to hear that there is better treatment today. I am in the beginning stages of looking for treatments since my mom is definitely not a candidate for surgery, liver transplant, or chemo. That’s a good thing! I feel those will make her worse and not worth it. This is due to her age and anemia.

    Thank you!

    #69359
    marions
    Moderator

    Ubri…..I am trying to understand, does your Mom have cholangiocarcinoma and you too have been diagnosed with this cancer?

    Hugs,
    Marion

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